Kiko Matthews: A life with Cushing's

Bernadette Fallon

Not many people have pituitary surgery for Cushing’s disease just months before rowing unaided across the Atlantic. Meet the woman who did.

Kiko Matthews Original Image

Kiko Matthews has always been active. Tennis, swimming, cycling, lacrosse and hockey at school, activities that took more of a back seat however when she went to university, graduating from Newcastle with a first-class degree in molecular biology. A career in teaching followed, though not before a series of gap years saw her do everything from travelling across Mexico to supporting a tetraplegic charity drive from the UK to South Africa.

When she was 29, she began to feel ill. The symptoms started with a strange taste in her mouth and expanded to include excess weight and body hair, difficulty sleeping and feeling, as she explains, “as high as a kite”. She also had short term memory loss, though wasn’t really aware of it at the time, as well as muscle wasting and osteoporosis

“I went to the GP and when I showed him the inside of my mouth, he told me I had thrush which was the result of either HIV or diabetes. I was like, ‘great, that’s a bit of a shocker!’. Then my mum actually diagnosed me. She’s a nurse and figured I had Cushing’s, but my dad (a GP!) told her not to be ridiculous, as it’s so rare.”

Mum turned out to be right, though by the time Kiko was admitted to King’s College Hospital, she was seriously ill, with cortisol readings ten times the normal level. Unlike most Cushing’s patients who go through a long period waiting to be diagnosed, Kiko’s diagnosis was quick – partly she says because she let her symptoms get so bad before looking for help.

“Looking back, I’d only had symptoms from January, and I was diagnosed in summer. I thought maybe I had polycystic ovaries because I was a bit hairy, my periods weren't regular, and I was a bit podgy - but the severe symptoms only happened over a six-week period.”

And while she had stopped sleeping completely from about May, she initially thought this was a good thing. She used the time to exercise excessively, revealing that she would go for a 4-mile run, followed by a 40-mile cycle, finished off by 120 lengths in the pool. She says she was “a bit away with the fairies”, experiencing psychosis and mania due to wildly fluctuating hormones.

But just before the operation to remove her tumour, she almost died due to being over-stabilised pre-surgery and spent a 24-hour period in intensive care. Finally, the surgery was successfully carried out, though she did have a period of temporary diabetes mellitus straight after.

Afterwards, she explains, it was tough.

“Mum was looking at me like I was dying, and I felt guilty that I was putting her through that, so I told her she had to stop worrying, that it wasn’t going to change anything. My mates came and visited but I couldn't remember who had come or what I'd said to them. But luckily my short-term memory loss meant everything passed very quickly,” she laughs.

Five days after surgery she was out of hospital, four months later she was back at work and everything became, as she puts it, “normal” again. She was on a hydrocortisone replacement plan for about 18 months, having stopped it for a while, but then realised it was adversely affecting her health and resumed.

And she also took the chance to make some major life changes, leaving her teaching job which she admits she never really enjoyed anyway, and deciding instead to “live my life and give back”.

“I found that doing charity work and volunteering and not thinking about me all the time, was definitely a more positive way to live. And so I looked into combining all of those choices.”

She travelled all over the world, eventually ending up in Africa where she learned how to paddleboard and on returning to the UK, she set up a charity for the sport. She ran it for several years, explaining it was a great way to do some “unintentional coaching”, being outdoors and talking to people about their day, getting them to forget their worries and talk about what was on their minds.

Then, wanting to do something bigger and create a platform to help others by telling her story, she decided she would turn to rowing. Prince Harry might also have had a hand in it – following a conversation when her mum suggested that the prince might make a good boyfriend for the then single Kiko!

“I thought, good idea, how am I going to get his attention? I know, I’ll row the Atlantic and go for the world record, then he’s bound to hear about me,” she laughs.

Never mind she had never rowed before and had never been to sea – she was filled with an unshakeable confidence.

“I said if five other women have done it, what makes them more special than me? I can learn – after all I'd learned how to set up a charity and run a business. You learn all through your life so why would this be any different.”

It turned out to be another manic period which culminated in the discovery that eight years after her first operation, the tumour had returned. She had just signed up to do the Atlantic row to raise money for King’s College Hospital when she was diagnosed. Not all the symptoms had returned but, just like the last time, things escalated quickly.

“I said to the doctors, I think the Cushing’s has come back but I’m rowing the Atlantic in six months, so you need to hurry up.”

Three days after surgery she was out of hospital, ten days later she did a 100km bike ride. And yes, she did row the Atlantic six months afterwards, so focused on her end goal rather than her illness that she left her medication behind in the hotel on the morning of the row. She had to go back for it.

“My focus has never been my illness. It's always been, okay, I’ve got something wrong with me but everything else in life is more important. Because you can’t control your illness, there's nothing you can do other than be positive and listen to your body.”

The doctors were working in the dark when it came to prescribe the correct levels of medication for her row - nobody had ever taken to the Atlantic post-surgery before. They suggested she quadruple the dose.

“There was no benchmark for this but obviously if you are out rowing for 12 hours a day, in a new environment with crazy sleeping patterns, it’s very physically and mentally stressful. And the one hormone you need is cortisol.”

Basically, regulating her doses as she went, responding to how her body was feeling, Kiko finished the row 49 days later on a normal medication cycle. She had doubled her cortisol output levels while she was at sea, forcing her body to respond and recover. Her doctors believe this happened much quicker than normal because of the intense physical effort.

And yes, she did break the record and is now the world record holder for the fastest women’s solo row across the Atlantic, an achievement she is immensely proud of.

Since then she has come off all medication and also cycled around the coast of the UK, starting and finishing in London and taking in Scotland, Wales and Northern Ireland on the way. She also stopped off for beach cleans on the journey, motivating 2,000 volunteers on the route to clear three and a half tonnes of waste from local beaches. All part, as she says, of her living and giving.

She believes that exercising and being fit helped her recover quite quickly, despite being so ill when she was originally diagnosed. And this is her advice to others, who may be going through the same diagnosis. Being in good physical condition is a huge help. As well as having a positive attitude towards your condition.

“You can’t do anything about your condition so once you let go and stop worrying, things get better. Stressing and worrying expend energy and if you're going to expend energy worrying, that's energy you can't use to go for a run or get better. You have to understand it's out of your control so relinquish yourself into hands of medics and your body and focus on putting your energy into the right places. Focus on staying alive and getting better and exercising to stay fit and healthy.”

 

You can read more about Kiko’s story here. She has also written a book about her experiences, Kiko: How to break the Atlantic rowing record after brain surgery, which you can buy here.